Child Cancer

Thangam Debbonaire Excerpts

Monday 28th November 2016 Westminster Hall

[Thangam Debbonaire (Bristol West) (Lab)]

I thank the hon. Member for Bath (Ben Howlett) for his introduction and other hon. Members for their personal and heartfelt speeches and interventions. In particular, I thank the parents of Poppy-Mai, who started the petition and so brought this matter to the attention of the House.

My five asks are clear. First, more units such as the specialist one in Bristol for teenagers and young adults with cancer are needed. The units need to be carefully commissioned so that the maximum amount of specialist clinical knowledge is available to the maximum number of young people.

Secondly, a clear commissioning structure for services for children, teenagers and young adults with cancer is needed, so that everyone knows where the buck stops and who is responsible. Thirdly, the benefit system needs to be adjusted, as other hon. Members have said, so that the families of children and young people are not put into awful financial difficulties such as we have heard about just at the time when they most need to concentrate on their child and nothing else.

Fourthly, Government leadership is needed—I urge the Minister to respond to matters raised by me and other Members—with commissioning guidance, clear priorities and funding for specialist services. Fifthly, the Government need to take responsibility and say how we will go about researching childhood cancers in collaboration with European Union partners after we leave it.

Earlier this year, I visited the specialist teenage and young adults unit in Bristol, accompanied by Christine from the Teenage Cancer Trust, which contributed to the cost of the unit. The unit creates and maintains an environment that provides care for the whole person, helping that young person to cope with the emotional side of their illness, as well as giving them time and space to do school work, to be with friends and family, and to just be a young person not defined by their cancer.

The decor definitely does not make the unit feel like a cancer ward. Yes, per patient, that is more expensive than adult cancer wards. Thankfully, cancer is rare in childhood and youth, but young people have very different specific needs to be met.

[Mark Tami]

As my hon. Friend is making clear, we have to have specialist centres, but we must not think that we can have them on our doorstep everywhere. That will just not happen, and it would not make sense for it to happen. If we have specialist centres, however, people will have to travel, and families need support and somewhere to stay. I put on record my support for the Ronald McDonald House Charities, which do incredible work providing parents with somewhere to stay. The actual cost burden on parents alone for what can be long treatment periods is astronomical, and a lot of people simply do not have the money.

[Thangam Debbonaire]

I, too, will be mentioning similar services later in my speech. Absolutely, the last thing parents facing such awful situations need to be worrying about is where they will stay, how they will afford it and how they will afford even to put petrol in the tank.

My nephew was diagnosed at age 12 with osteosarcoma, a very rare childhood cancer. We were all so focused on getting him and his mum, and his sisters and brothers, though that illness that the longer-term impacts felt very much secondary. Specialist units such as the one in Bristol help the family as well as the young person with cancer to see the whole of life as important, to think about the longer-term implications and to prepare for them. I pay very personal tribute to the teenage and young adults cancer unit in Bristol for its work and to the Teenage Cancer Trust for its support of the unit.

As my hon. Friend said, getting the number of units right is difficult. Given the thankfully low numbers of childhood cancer victims, if the units are to be truly specialist, it will not be an easy matrix. To ensure an appropriate number of specialist units, the Government need to be clear with appropriate commissioning guidance and take responsibility for following it through.

In October when I asked the Department of Health in question 50795 what proportion of specialist units were funded by charitable trusts, the Under-Secretary of State for Health, the hon. Member for Warrington South (David Mowat), replied:

“This information is not held centrally.”

For me, that is simply not good enough. Yes, commissioning is done locally, and increasingly commissioning groups and trusts are collaborating, but Government leadership is necessary to work out how many units are needed and how to fund them. Will the Minister commit to gathering that information centrally in order to estimate properly the funding needed to commission appropriately throughout the country? Will she further commit to consulting on and publishing clear commissioning guidance so that the responsibility for commissioning and funding specialist treatment centres for children, young people and young adults is clearly identified, and so that a structure for commissioning across health regions is clear?

On the future of research into childhood cancers, there is clear potential for harm when the UK leaves the EU—I say “potential”, because any such harm can be mitigated, but the Government need to act urgently to address it. Earlier this month in answer to my question 50081 about research, the Minister for Universities, Science, Research and Innovation gave welcome assurances about funding. I welcome those assurances, but he did not mention research cohorts. Thankfully, childhood cancer is rare, so it is vital for UK researchers to be able to collaborate fully with their EU counterparts so that they can carry out clinically adequate research with a sufficiently large enough group of children and young people to provide clinically useful and secure results. Yes, funding is vital and I am grateful to him for those assurances, but it is not enough. My next question to the Minister present is this: will she commit to discussing that with her colleagues in the Department for Exiting the European Union, along with research about other rare childhood cancers?

As my hon. Friend the Member for Alyn and Deeside (Mark Tami) mentioned, children and young people with cancer and their parents often need to travel long distances for specialist treatment. That might always be unavoidable and, in any case, there are other huge financial costs for parents. In September, I was proud to chair the parliamentary launch of a report by CLIC Sargent, which does so much wonderful work to support children and families affected by childhood cancer. The report shows that the costs of cancer are not only emotional, educational and physical, but financial.

One young person at the launch spoke about how he had to prove repeatedly to the benefits agency that he had cancer and that his treatment was still not over nor his recovery complete. Another young person found that her student loan was stopped because she was deemed to be a student no longer, but her halls of residence still charged her rent. A lone parent spoke of her struggles to manage her finances while faced with losing her income from employment and the increased costs of driving her son a long distance many times each month for treatment, as well as the added costs of heating a home all day for a very sick child, which is often overlooked, and the costs of keeping clothes, bedding and house scrupulously clean, which is so important because the risk of infection is extremely high for those undergoing gruesome treatments such as chemotherapy, as other hon. Members have mentioned.

CLIC Sargent and other charities I know help with all those things and more. I have had the privilege of being shown round the CLIC Sargent house in Bristol, located a few minutes’ walk from the Bristol Royal infirmary. That house, run by a wonderful woman who knows all too well what childhood cancer means, provides a haven just when it is needed.

[Wes Streeting]

May I, too, pay tribute to Haven House children’s hospice, which is just outside my constituency and serves many of my constituents? Hospices are often associated with end-of-life care, but as in the case of Haven House, they also provide great support to families whose children may not be near the end of their lives and help them on that journey. They are such a powerful and important source of support, and of course they are all voluntary and rely on the public’s generosity.

[Thangam Debbonaire]

My hon. Friend is absolutely right. There are many charities across the country that do everything they can to try to help the families of children and young people with cancer. I pay tribute to them all, even though I cannot possibly know their names.

The CLIC Sargent social worker is on hand in the Bristol royal infirmary when a family receives a devastating diagnosis and is told that their child needs to start treatment right away. Such families are often many miles from home. They can arrive that night at CLIC Sargent house with nothing and be given somewhere to stay for as long as they need it, clothes and bedding if they have come without them and, when necessary, space for the whole family so brothers and sisters can be with their family and their sibling who is being treated. I am proud to declare an interest in CLIC Sargent: my beloved sister-in-law works for it. She gives her time and expertise to an organisation that has done so much for our family and many others.

Will the Minister commit to discussing with her colleagues in the Department for Work and Pensions the financial impact of childhood cancer on families, and will she use the CLIC Sargent report as a reference point? Will she further consider supporting the provision of such homes for the families of children with cancer? If those homes are essential for allowing children to be treated, we must surely consider prioritising them along with other specialist support for statutory funding, at least in part. I do not believe it is right that such homes, which are so essential, must rely entirely on the generosity of volunteers and charitable giving, although I pay tribute to people who raise money. The Government must consider providing that funding.

As other hon. Members have said, until someone has known childhood cancer in their own family, it can be difficult for them to comprehend its full impact. Yes, there are excellent briefings available from specialist cancer charities—CLIC Sargent, Teenage Cancer Trust, Cancer Research UK and other charities provided briefings for this debate. My family was fortunate. Despite an initially very difficult prognosis, that 12-year-old child is now a happy, well adjusted young man in his 20s with a responsible job and a secure relationship with his partner, but I grieve for those who are not so fortunate. I want to ensure that, whatever the prognosis, no family has to worry about money at that most difficult time. I want us to do everything we can—the Government must lead—to improve awareness, early diagnosis, treatment and support, so that one day deaths from childhood cancer end and we alleviate and reduce, if not completely eliminate, the terrible suffering that it brings. I also hope against hope that one day, no parent will ever have to hear the word “cancer”. I long for that day, as I am sure we all do.

--- Later in debate ---

[Thangam Debbonaire]

On the point about upgrading Linac machines for radiotherapy, one of the key problems that Cancer Research UK raised with me was radiographer and radiologist staffing shortages. Can the Minister add anything to reassure us that when the Linac machines are upgraded there will be sufficient staff?

[Nicola Blackwood]

There is also work being done on making sure the workforce are in place; and there is an overall strategy with Health Education England to do that. I am happy to write to the hon. Lady to give her details. I am slightly concerned that I have a lot to get through and I am going to bore everyone.

The taskforce has also recommended a new drive to deliver chemotherapy e-prescribing, which makes a significant difference to the experience of families who are supporting children being treated for cancer. Providers are working to implement plans for children by September 2017. Under the strategy, proposals will have been developed by March 2017 to improve the transition of young patients with cancer between children’s and adult services. As the hon. Member for Bristol West (Thangam Debbonaire) has said, transitions continue to pose a problem in some areas, with paediatric services stopping at 16 in some hospitals, but adult services not starting until 18. In addition, pathways between specialist centres and shared care units currently cause great difficulty for patients. The strategy says that there is a need to address that, and I hope that the hon. Lady will be reassured that work is being done on it.

An important recommendation of the strategy is that NHS England, the National Institute for Health Research and cancer research charities should work together to consider how to achieve a significant increase in access to clinical trials for teenagers and young adults with cancer—the shadow Minister, the hon. Member for Burnley (Julie Cooper) spoke about that. A far smaller proportion of teenaged and young adult patients than of younger children take part in clinical trials. There is obviously an opportunity that we need to grasp. The strategy recommends that we explore ways in which clinical trials for children and young adults with cancer could be significantly increased. As the shadow Minister said, NHS England should set an expectation that all centres should aim to recruit at least 50% of their patients for those trials by 2025. That is the target that we are reaching for.

Outside London, only four centres treat more than 100 children with cancer a year, across all types of cancer. The strategy recommends that NHS England, working through the children, teenagers and young adults clinical reference group, should consider whether outcomes could be improved through further reconfiguration of services, as the shadow Minister said. Any review should again be based on patient outcomes, including patient experience, as few centres offer comprehensive specialist services for children at the moment.

Many hon. Members have rightly called for research to be prioritised in that context. It is good that, since 2010-11, we have increased annual investment in cancer research through the National Institute for Health Research, including research into childhood cancers, from £101 million to £142 million. However, we know that a lot more needs to be done if we are to deliver the changes that we want to see. That is why the Government announced the largest ever investment in health research in September— £816 million over five years from April 2017. Some 20 NHS and university partnerships across England have each been awarded funding through the NIHR, and we expect to see significant research activity in childhood cancers within that programme of investment.

The NIHR is also collaborating with three charities—Teenage Cancer Trust, Children with Cancer UK and CLIC Sargent—to identify gaps and unanswered questions in research into young peoples’ cancer and to then prioritise those gaps that patients and clinicians agree are the most important. The initial survey opened just last month, so we expect to see progress on that soon.

A new working group has brought together clinicians, charities and officials to discuss how we can increase the level and impact of research into brain tumours, including those in children. The group first met in October and the Government anticipate that it will complete its tasks by September. I will be co-chairing the next meeting in January with the Department of Health’s chief scientific adviser, Professor Chris Whitty, to make sure that we make the progress needed.